Local campaigners are improving services

Getting Parkinson’s on the political agenda 

Scotland and Wales held elections in May and the community put Parkinson’s on the agenda.

In Scotland, the community sent over 800 postcards to party leaders asking what they’ll do to improve care and support for people with Parkinson’s if elected. And an impressive 32 groups got involved with organising activities.

We also had campaign trail meetings with all 6 of the main party leaders where our asks were included in party manifestos.

Read more about the elections in Scotland.

In Wales, we created posters and groups got involved in election activity in their area. We also created a series of videos sharing what needed to change and posted about our activities on social media.

Getting medication on time

People living with Parkinson’s need their medication on time, otherwise their symptoms can get worse. Thanks to the efforts of campaigners, a number of NHS trusts have pledged to take action.

• In the south west, University Hospitals Dorset Foundation Trust and Gloucestershire Hospitals NHS Foundation Trust have joined our campaign.
• In the north west, volunteers helped to get the East Cheshire NHS Trust to update their medication procedures. 
• All trusts within the west midlands are now taking action to make sure people get their medication on time. 
• In London, the Royal Free London NHS Foundation Trust has vowed to support our campaign. And in Kingston, we’re planning to involve the community to demand that the Kingston and Richmond Trust takes action.

Find out more about our Get It On Time campaign and how you can get involved.

Improving access to Parkinson’s specialist healthcare services

Campaigners have also played an important role in helping people living with Parkinson’s get faster access to specialists.

Our campaigners' activities have helped persuade:

• NHS Borders in Scotland to recruit another full time Parkinson’s nurse.
• East Kent Trust to recruit 2 new Parkinson’s nurses.
• University Hospitals Dorset Foundation Trust to increase nurse provision and improve the Parkinson’s nurse phone line.
• Northampton Trust to recruit a part-time Parkinson’s nurse, reversing their plans not to fill vacant posts.
• Norfolk and Norwich University Hospitals NHS Foundation Trust to keep the Norwich Parkinson’s nurse home visiting service.

And we’re delighted that following a meeting with the Board of the Milton Keynes University Hospital Foundation Trust, the local Parkinson’s group influenced them to appoint a new specialist nurse.

Find out more about our Can’t Wait campaign and how you can get involved.

Ongoing activity to improve care and support

We continue our efforts in Gateshead to protect specialist speech and language therapist support. In March, campaigners helped us gather over 600 petition signatures and hold a rally outside Queen Elizabeth Hospital to safeguard the service, which featured on BBC Look North. This has forced Gateshead Health NHS Foundation Trust back into negotiations with us.

The North Down Support group and Ballymena Branch have recently hosted their MLAs to address issues about nurse vacancies, access to health services and time critical medication problems.

And the Deep Brain Stimulation (DBS) group in Wales shared valuable insights about their experience with DBS with clinicians who are making plans to change the service.

Fixing the broken Blue Badge system

In June, we launched our Blue Badge campaign in England to fix the broken system.

In just over a month, campaigners have sent over 600 digital postcards to council leaders and local groups are organising events to hand in their postcards over the next few months. We’ll also be briefing MPs in October about what action they can take.

Find out more about the Blue Badge campaign and how to get involved.

Separate campaigns will be launched later this year in Scotland and Wales.

A campaigner’s experience

Nic, a campaigns volunteer based in Sunderland, has been involved in a range of local issues.

She played an important role in our Gateshead campaign, securing signatures for the online petition, working with the Movers and Shakers to help generate publicity and attending the rally outside the hospital. She also organised an awareness day at the Sunderland Royal Hospital about our Get It On Time campaign for World Parkinson’s Day.

Nic isn’t stopping there. She's campaigning to fix the broken Blue Badge system and has already contacted the City of Sunderland Council about improvements they could make and how they could work together.

Nic said:

"I wanted to increase the profile of the charity’s national Get It On Time campaign and I thought combining it with World Parkinson's Day was a great link.

"I wrote to the Chief Executive at South Tyneside and Sunderland NHS Foundation Trust, who was immediately supportive and linked me into his team to organise.

"I also contacted the Mayor of the City of Sunderland and asked him to attend. The day was amazing. The neurologist who specialises in Parkinson’s shared the event really lifted her team, who were buzzing that the Mayor had visited.

"I wholeheartedly recommend becoming a campaigns volunteer, you can make such a difference both locally and nationally too."

Mattie, Senior Local Campaigns Officer at Parkinson's UK, said: 
"I absolutely love working with amazing campaign volunteers like Nic. From holding NHS services to account to raising awareness of time critical medication and campaigning around Blue Badges, campaign volunteers are making a difference in their communities.

"Everyone can be a campaigner! And we provide support and training. Just get in touch with the campaigns team today to make a difference for people with Parkinson’s."